Thanks for all the comments, the blog layout has changed and for some reason I just got the notification from weeks ago. I think that is fixed thankfully!
So a Sam update.... March 9th Sam had a MRI under anesthesia We were allowed to walk him in and Jon helped him go to sleep. Evidently as soon as we walked out there was an emergency! Sam has always (more than 50 times) been put under by being masked and then had an IV put in. They usually do this with younger kids but since Sam is like a toddler they've kept doing it. Well..... this time he had a reaction, his throat closed up and he quit breathing!! The doctor had to bag him and they had a very hard time intubating him because of several reasons. We had NO IDEA this drama was going on....
At the SAME time or very close to it our oldest son Steve called to check on us. As we were speaking, I heard him say "oh my God!" Well he was driving to lunch and was beside a semi hauling roofing materials. The lumber for the roof (the peak was already put together) was strapped down and a strap broke and flew across his windshield. Then the prepared roof began falling off the truck right behind him! By the grace of God it missed his car. He was shook up.
After we called him back to tell him what happened with Sam (we didn't know at the time he called us) he told me to check on Shad and tell him to stay in bed for the rest of the day!!!
Sam had no issue and was released that day after the anestheslogist warned us to never ever let him be put to sleep outside of a hospital and never by mask again. She was so shook up. She went back and reviewed his surgery that took place last year there at St Joe's and she was relieved to find she did exactly the same protocol as her colleague did. We went home grateful yet again for God sparing our Sam and our Steve!
Just the Sunday before Jon preached a sermon about how God hears and answers prayer especially prayers we pray for our family. He shared some things our family has gone through and how God moved mountains. While I know every prayer is not answered in the way we want it to be-I know I can trust my Lord! Boy we lived it out that week! In situations minutes apart at the most we could have lost two of our children.... I'm so very grateful we did not! So if our family ever comes to your mind say a prayer for us!
So after ALL of the tests, the trip to NY and that MRI.....Sam's brain is fine, the blood flow is fine. There were two small things the MRI suggested. One was a a mild mucosal thickening of the paranasal sinus with mastoid air cells likely. That could cause some dizziness. The other was Partial empty sella which is related to the pituitary gland and could cause something like vertigo..... And even though Sam is better there are days when he is still "off" He seems to have issues every single January-April....different issues non related but it's something every year. He also seems to battle anxiety/depression during that time.
Recently we also discovered that in chromosome 19 he has all parts of it but it's in "disarray" It's out of order. Let's say it should read "ABCDEF" His reads "HXVBZP" It might be a new marker for Peter's Anomaly! Sam has what is called "clinical Peter's" That means his eyes and everything else has all the characteristics that Peter's Anomaly has but he doesn't have the chromosomal markers. He is in a study with the University of Wisconsin and this might be a brand new marker for Peter's. there are a few others who have this and 4 of them also have depression/anxiety occasionally. And the funny thing is they all have it in the January-April window if I remember correctly! Of course if we lived up north that could explain it but we live in sunny Florida so they found it interesting. He also has a deletion in chromosome 4.
In February Sam turned 17 years old...what a journey it's been for us! He's had so many things happen to him but he's still here!
His new toys "communicate" with each other...it's a little freaky LOL But as long as they light up and play music he is happy.
Sam is finished with puberty and according to bone scans & blood work will not grow any taller. He has to be shaved weekly and we keep his mustache it's so cute to me. He loves getting shaved, haircuts, pedicures and manicures (yes he goes with me Sarah would never allow a stranger to touch her!) He LOVES massages and we also go together for them! He's about 4'10 it's a little hard to measure him because he stands with his knees bent (something we are dealing with) He weighs about 100 pounds. He's perfectly proportioned even though he is not on the growth chart for a 17 year old.
Sam is a blessing, if he had never been born, I'm pretty sure we would have never adopted children with special needs. His life has changed so many other's lives. God spoke to me one day on the way to work when I was not in a good place and told me I'd have a son named Sam and he would change my life. I had NO EARTHLY idea how true that was going to be! He changed the whole course of my life and that is not exaggeration! I love him so much and at the same time I worry so much about him. Sam has given me plenty to worry about over the years. But as I reflect back I am so glad I have had the honor of being his mom!
